Please Help! Need people who understand!

[southerngirl]

I've been suffering with horrible lower right abdominal pain since 1998. My family doctor thought that it might be endometriosis. I finally found a doctor that would do a laporoscopy and discovered that it wasn' endo. So, I was just lost at that point. Then, summer of 2003 I had a horrible UTI, three weeks of antibiotics and the pain was still excruciating! After months of being tossed from doctor to doctor, I started doing my own research and when I read about IC I thought, "That's ME!" I finally found a doctor who agreed that it could be IC and had a cystoscopy done and yes, it was IC. Since then I've tried elmiron, interstim, amytriptyline, and nothing has worked. Two months ago the pains in my abdomen became so severe that I went to the ER and was admitted to the hospital for ten days. I was diagnosed during this time with fibromyalgia and functional bowel disorder. I was put on zoloft, percocet and lorazepam. The zoloft has done absolutely nothing. The lorazepam at least helps me sleep. My PCP sent me for a consult with a GI clinic, then I went back to him (my PCP). He has decided to let the clinic treat me instead and is trying to get me back in for treatment. He won't give me anymore percocet and only begrudginly gave me ten vicodin to last me until I get into the clinic. And I know the docs at the clinic won't give me anything for pain because they already said that I needed to be off the pain meds when I was there for the consult. Another thing is I can't find a specialist for IC in my area that accepts my insurance!
Then, two nights ago I was once again in horrible pain! I went to the ER again. This time they gave me something for the pain, checked to make sure it wasn't appendicitis, told me that I needed to go to a psychiatrist, gave me a script for pain meds and sent me home.
Then, today, the pain meds from the hospital wasn't helping. I was laying in bed, crying, with a heating pad. I wanted to go to the ER again, but my family didn't think I should go. They told me that it wouldn't do me any good, and that the ER wouldn't keep giving me meds. They think that the docs will tell me to stop taking pain meds because the strong ones arent helping. I think that I'm having a flare and that once the bad flare passes I will be able to go back to lower doses of pain meds.
What does anyone else think? Does that sound like a flare? Any advice on how to explain to my family and my doctors that pain meds are the only thing that gets me through the day? And how do I explain that I need varying levels of pain meds, because my pain levels vary? Also, when I 'm hurting so bad that the meds I'm on don't help, is the ER the best thing to do? I don't want to be seen as a regular or an addict and I don't want to be told to go to a psychiatrist again?
Please help. I need advice and support from people who understand.
:headbang:
This is how I feel!

[Dixiefireball]

:hi: and :welcome: to the icn family.
it does sound like your flareing. are you on the IC diet?? by not eating or drinking the right food it can send you in a bad flare you can read about the ic diet at www.ic-network.com/handbook you may also have an infection starting :(
when you had your test done that said you had IC did the doctor tell you you had hunner uclers on the bladder? the reason i ask i have bad hunner uclers and have almost the same pain your talking about plus mine runs down my right leg most of my pain is in my right side.
I take perocets daily been on them for over a year now. i also do my own cocktail treatments at home. which has helped me a lot you can read about treatments at the same web address i gave you above.
Hon this isn't in your head your pain is very much real! some e.r don't know enough about I.C to really help.
I'm sorry i don't know the link here but there is a place here on the icn that shows doctors that sp. in IC. in many many areas.
I live in Gaffney South Carolina I don't know where you live but I have a great wonderful careing doctor in Spartanburg s.c if you are in my area please let me know I will try to help you.
in the mean time you can try taking one tsp of baking soda to an eight oz glass of water to see if that calms down the flare. try taking a tums. drink lots and lots of water to flush out anything you may have ate or dranked use an heating pad or ice on the area that is hurting take some tylonal for the pain if your out of your pain medicine.
there is an angel here named Katrina that has a great list of way to help pain hopefully she will be here shortly to give you the list she has.
sending you hugs and prayers
Rhonda

[shennan]

sorry you are feeling so unwell.

http://www.ic-network.com/handbook/
this is a good place to start your education on ic.

you are not nuts, so don't think that.
ic is very painful. everyone has a different pain tolerance, too.

please start with changing your diet, if you have not done so yet.
it does help a little. for me at least.

no soda, alcohol, or acidic food or drinks.
no carbonated drinks either.
i eat chicken, broccoli, potatoes, rice, and shredded wheat.

http://www.ic-network.com/md/careproviders.html
here is the list of ic doctors and physical therapists in the us.
see if your gp can get you to a pt, too.

wonder why the pain mgmt place won't help with pain meds??
my opinion, you need to get to the closest ic doctor that will take your insurance.
this doctor can advise a closer doctor, possibly.

please don't give up!

it will get better. mine has gotten a little better, but i am still in pain and it hurts to go the :toilet: ...

my doctor gave me darvocet and norco.

i take halves....
i also take skelaxin and valium for spasms.

halves too...

i take a whole darvocet at night, though.

good luck~~
:)
shenna

[dancemomof2]

Hugs, sounds like you are getting the run around, please don't give up if this is IC it sure is real and pychiatrist is needed, unless YOU feel the ned for one. Hugs

[kelly McC]

I suggest a few things . Document your pain and use a pain scale. How long it last and things it kept you from doing. I also would suggest taking someone with you to your doctors visits who can explain what your going through .There is a patients pain rights you can make a copy and bring it with you to your appointment. I also printed out as much information on IC and how much pain it can cause.Have you checked the physicians list here on the ICN . Good luck and hope your feeling better,
Kelly

[southerngirl]

Thanks so much for the replies! and so quickly! Dixiefireball, I'm in Raleigh, NC, how far away is your doctor from here?
I have tried the IC diet and I have found what foods to stay away from.
How do ya'll talk to your doctors and get them to understand the need for pain meds. I've gone through keeping a pain journal and rating the pain, I've explained that without something for pain, I'm stuck lying in bed in pain all day and the point of doctors is to help a person functrion---lying in bed in pain is not functioning!!! I still get the old run around about addiction and rebound pain!
Most of the time I use a heating pad and/or an ice pack, and the pain meds. (Tylenol and Motrin do absolutely nothing!) So, if the pain won't go away, any other advice? Is the ER the way to go? And what should I say if I go there? How do I explain it to them?
This illness is so frustrating!!! and debilitating. And the back and leg pain from fibromyalgia doesn't make it any easier. Sorry, just have to vent a little. It's hard when you don't have anyone who understands, even though they love you. I'm sure you all know what I mean by that. Anyway, I'll appreciate any more advice I can get. Thanks Ya'll! :)

[Katrina]

:welcome: to the boards
It can take trying new docs and persistance to get doctors to understand. One thing that a doctor should understand is that pain chances with flare ups since that doesn't only happen with IC....so I may want to seek out a doctor that does understand rather than try to get your doc to understand. I am also going to give you a link to a treatment list because there are a lot of things to try out there.

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem

I hope you can find something to help you!
:grouphug:

[jeanababy]

I see Dr. Robert J. Evans in Greensboro (I live in Wilmington). From what I've been told he is one of the top five IC urologists in the US and is also on the Board of Directors of the IC Association. He is also a very caring doctor. PM me if you want his phone number.
Jean

[Dixiefireball]

My doctor worked with Dr. Robert Evans he is the top doctor over I.C around here (Dr. Evans) my doctor is the second I.C doctor. anything my doctor can't figure out he talks to Dr. Evans.

I'm Not sure how far it is hon from where you live my doctor has two offices and six other doctor that work with him I only see one.
they all know about i.c.
if you private message me i will send you the phone number to let you check it out.

Don't worry about venting here We understand!! :grouphug: vent all you need too.

If you are hurting tha bad please go on to the e.r and explain to them what is going on.
you dont' have to live in pain you have rights!
i do hope you get feeling better soon I look forward to hearing from you.
sending you hugs and prayers

Rhonda

[Sarojini]

Just wanted to welcome :welcome: you to the ICN....

It's not unusual to have severe pain with IC; I've been there before. At my worst, my husband found my lying on the bathroom floor in severe pain, having just vomited because the pain had been so bad. I was in tears. He called my urologist, and she fit us in immediately so I wouldn't have to deal with the meanies at the ER. So I know what you are going through....

You may want to find a good IC doc... and one that understands pain. What has helped me has been to go on a long acting pain med. I personally am on MS-Contin, which is an extended release form of morphine. However, there are others, like OxyContin. You take this type of med on schedule whether or not you are having pain at the time. Then, generally, you are prescribed a short acting pain med (I use Percocet) for "breakthrough" pain (pain that happens despite your long acting med, or just as the long-acting one is beginning to wear off). This will reduce your dependence on the short acting ones, and tends to manage pain better, at least in my case.

It may be good to ask your doc about this type of therapy. AND, if your current physicians are unwilling to treat your pain, please ask for a referral to a pain clinic. These centers specialize in treating chronic pain and have lots of options for you to try!

There IS hope. You are NOT stuck with a life of pain!!! :grouphug:

Keep posting here, too -- you will find lots of loving support, and that can be a big help when you aren't feeling so hot. :)

Again, welcome :)

[southerngirl]

Hey Everybody! First I want to thank all of you for responding with so much support and advice. It's so nice to hear other people who understand exactly what I'm going through.
I was going to say that the urologist that I was trying to see was Dr. Evans, but he doesn't take my insurance. The insurance company denied my request to go to him, because they said there are urologists in my area that do take my insurance. Unfortunately, none of the urologists in this area seem to understand IC, that is why my urogyn. suggested Dr. Evans since IC is his specialty.
If anyone is in the Raleigh area and knows a good urologist that really understands IC, please let me know!
Please keep responding everyone. It's just nice to hear others replies, advice and/or stories. Thanks so much. Hope to continue hearing from all of you. Even though I'm new to this and still am struggling I will give support to ya'll as well. So, feel free to complain and vent :rant: all you want. Ya'll put up with mine so far and I'm sure I'll need to complain and vent some more!
Well, I gotta go now. Talk to ya later.
:puppy: :cat:

[Dixiefireball]

If your family doctor writes out something to the inc. explaining why you need to see Dr. Evans will that not work? Dr. Evans would be closer to you then my doctor.
and if they want let you see Dr. Evans then i'm sure they wouldn't let you see my doctor that is in Spartanburg S.C.
I love my uro. he has helped me more then any other doctor ever has.
Its Very imporatant that you get a Dr. you can trust feel like you can talk to him.
I think the biggest break threw with my doctor was when i was having more female problems and i told him I didn't feel comfortable talking to him because he wasn't a women he asked me would I feel more comfortable if he went back out came back in with a wig on and dressed in drag LOL. that was really the break threw.
and the fact he takes the time with you and listens even when he is having a bad day he still show he cares.

[TexasHoney]

Hi, Southerngirl. I am glad to hear you found this wonderful website. These boards have been a godsend to me since this past spring when was diagnosed with IC. I NOW know that I am not alone. This a place where people do understand. These people are so nice and friendly here it is like I have discovered a second family. I hope you get to feeling better soon.

[jeanababy]

Southerngirl,
I see Dr. Evans on December 20. I'll ask him if he can recommend someone in the Raleigh area for you.
Jean

[Stella1609]

Just want to send you some positive thoughts and let you know that there are urologists out there who understand IC and are willing to help!!! Try the diet like everyone has suggested, and although I do take pain meds sometimes too, my first line of defense against flares is a microwavable heating pad.

Laura

[Babs RN]

Hey--
I hope you're doing better. As far as pain control, you by law have the right to have it treated satisfactorly in a safe manner. Please PM me...I'm only a nurse but would have no problem giving you some assistance in what to ask the docs as they unfortuately have the last word.

Let me know if you need anythingl


Hugs and kisses,
Barb :grouphug:

[jeanniebug]

Hey Southergirl and :welcome: !!! I just wanted you to know I can relate to what you are dealing with right now. I went through a horrible time the first year I was diagnosed with pain. The urologist who originally diagnosed me was completely against pain meds. I hurt so bad I wound up at the ER a few times too. I finally went to my family doc with my cystoscopy report, and printed some of the responses on this website from people saying they were on pain meds for it. I asked him why I was being made to suffer when there are docs who will help people with IC via pain meds etc.? He gave me hydrocodone right away for my flare ups. Well then we moved to TN and I prayed and prayed and I have finally landed the most awesome urologist ever. He gives me 30 Lortab or so a month plus valium for my bladder spasms. I know it's hard but keep trying..it took alot of detective work on my part to find a great uro. I went through alot of doctors to find the right one, but I won't bore you with all that. I hope you will find one quickly and easily, but if it does take some work the pay off is worth it all. My uro actually calls me sometimes just to see how I'm doing, out of the blue. He's a sweetheart. :) And Barb is right, you do have a right to have your chronic pain addressed if monitored safely by a physician. The needless suffering just really gets me upset. :cussing: IC can cause horrific pain, I have definitely been curled up in a ball bawling my eyes out praying for some relief. When I was moving from IL to TN, I told my family doctor who gave me the pain meds that I was worried my new doc would not continue to help me with the flare ups. He told me, to talk to the new doctor very frank and straight-forward about my pain, not to "hem and haw" and act nervous. He said doctors are trained to look for certain behaviors in people who are just trying to get pain meds for the "high." And he said that a confident, look 'em in the eye approach works best, and to explain that my quality of life is effected by the pain.This is not to say all docs will respond to this, it was just the advice of my physician and my personal experience. I just happened to land a great uro here, and I hope you find one that is awesome very very soon! Because you deserve to have pain relief, none of us asked for this, after all! Actually, with my current uro on my first visit, I just said, "I have IC and just moved here. My previous doctor gave me codiene for the pain. I'm almost out and need a prescription." I didn't even put it as a question I just went for it. He was like "ok." It's weird how doctors can be so different about chronic pain. The people here have some great advice too-I'm glad you've found this website. It has been a tremendous help to me in my journey with IC. Oh, and a heating pad is my best friend when I am in a flare up. Take care- :kissing: :grouphug:

[southerngirl]

Hey! :hi:
Thanks everyone!!! I'm still trying to find a doctor that specializes in IC. The uros i've gone to so far, don't understand IC and don't want to deal with it. I'm also trying to get into a GI clinic to get a comprehensive approach to my functional bowel disorder and fibromyalgia and I'm hoping that maybe someone there can help with the IC. I've been waiting for a month or more to hear back from this clinic and I just found out today from my PCP's office that the clinic is reviewing my problems and are trying to decide if they'll take me as a patient. That is so crazy to me. I don't understand why they have to approve me as a patient--that kinda irritates me. I had to call and ask my doc for another refill on my pain pills (he'll only give me 10 maybe 15 at a time). I ask him to give me enough to last me until I can get into this clinic and then I'll let them handle my pain.
I also use the heating pad, as well as ice packs and sometimes warm baths, and prayer. Every night I pray for the lord to help me through this hard time.
I send my prayers to all those others suffering with IC as well, because I know how horrible it can be. I'm sure there are some who are even worse off than I am, which I can't even imagine.
Thank you so much everyone for the replies and the suggestions. Don't feel shy--keep writing!! :toilet:

[ad8123]

Hello I know I have not responded before but I wanted to send you my support and prayers. I can not imagine life with Ic and no pain meds, thats the first thing my urologist gave me! (before the diagnoses!) If you can find a pain managment doctor they are more comfortable prescribing narcotic pain meds because that is what they do. I went from ultram to xodol so quickly when i got really bad. For me a hypogastric nerve block series worked like a charm and now I take 1 or 2 ultram a day or somedays none. I use neurontin and atarx to manage some of my Ic. Good luck and keep posting it is great to have people that understand.
Angela

[kate118]

Please listen to Babs (the nurse), you legally have rights regarding pain control! *Just my two cents*

[southerngirl]

Hey! Thursday night I was up all night unable to sleep, because I was in so much pain and I took my last vicodin which did nothing for me. Friday morning I finally went to the ER. I told them what was wrong and told them that I thought it was an IC flare. The doctor pressed on my abdomen so hard that I was in worse pain than when I got there. Then she decided she needed to do a vaginal exam, even though I told her those were extremely painful for me, and to top it off she wouldn't give me anything for pain until after she did the exam. Afterwards, they did give me something for pain, but it only helped for about 10 minutes. Then, they want to do an ultrasound and they put in a catheter!!! Excruciating!!!! Then at the ultrasound, they clamp off the catheter and pump saline into my bladder, I was in so much pain that I was begging him to stop. He said that there wasn't enough fluid in my bladder yet, but he cut off the saline and called the ER to send some more pain meds for me so that I could get the test done. They refused to give me anything else until the test was complete. So, the guy in the ultrasound tried to get some pictures as was. Once again--sooo painful--fluid in the bladder and him pressing on it. Then, he couldn't see enough, so he has to go inside the vagina to do an ultrasound. I ask him to please get someone to take out the catheter first, because I couldn't even move my legs with out crying out in pain. Twenty minutes after he called the ER to come remove the catheter, no one had shown up. So, he had to get his supervisor to call them. Finally, 10 minutes later, someone shows up and takes it out. Then, he does the other ultrasound. Next, I'm taken back to the ER, where I'm left in the hallway, they put someone else in my room and there were no other rooms available!!! I'm crying and moaning in pain and I have to wait about 30 minutes before they would give me anything for pain.
Oh, wait! One other thing that happened before all the other stuff when the nurse was checking my vitals, my blood pressure was really low, which it always is, especially when I'm in pain, anyway, he said, "Well, if you're really in that much pain, you're blood pressure wouldn't be that low."
Can you believe that?
Okay, back to where I was--in the hallway. Finally, given something for pain. Then, taken for a CT Scan. By the time I get back, I'm in horrible pain again. My sister asks the nurse to give me something for pain. He never comes over there. About an hour later the doctor comes over and tells me that she's going to call my PCP. A little later she has the nurse bring me two vicodin, an antibiotic, and something for my nausea. They then give me a script for 12 vicodin to add to the script he ( my PCP) called in for me Thursday afternoon for 10 vicodin ( I had been planning to pick it up Friday morning). We are trying to ask the doctor some questions and she kept walking away to answer phone calls and you could tell that we were annoying her by asking questions. Then they sent me home and told me to see my family doc (PCP), Monday.
I hate to have to see him. I figure he'll start on his rant about pain pills and use the fact that I went to the ER as proof that you have to take stronger and stronger pain pills because they stop working. I'm arming myself with info from this website about chronic pain and addiction and about IC flares and how sometimes you need stronger meds and sometimes the stuff you normally take works fine. Wish me luck. And if you have any advice let me know.
This flare I'm having now is about to kill me. I can't even get out of bed. I'm having to take 2 vicodin every 4 hours and that only keeps me from crying all the time. I have had the heating pad on all weekend as well.
Anyway, gotta go.

[southerngirl]

Went to my family doc today. I had him read me the report from my cystoscopy and found out that I have hunner's ulcers. He wants me to go back to the urogyn that diagnosed me, since I cant get into the IC specialist. He thought someone at least more familiar will be better than just a family doc. So, he is setting up the appointment for me, because he thinks he can get me in sooner if he makes the appt. Hopefully, he will be able to do something for me. He was a very nice doctor and I really liked him and felt comfortable with him, but he wasnt well versed in IC and wanted someone who understood it better to help me. Oh well! Maybe he can do something for me anyway--we'll see.
My family doc decided to give me a script for xanax and he did give me a few more pain meds. I'm going to talk to my urogyn about a tens unit. I tried one once awhile back when I was in physical therapy, I don't know if it will help, but I figured it's worth a shot. Anyone know anything about tens?
Well, I'm still in an awful flare ever since Friday. I spend all day in bed on my meds with a heating pad and every time I get out of bed I double over. My husband had to get a wheel chair to take me into the doc's office today. I hope this flare eases up soon.

[traceann]

Oh my gosh you are one tough cookie! I just want to say I so hope you feel better soon, you have just got to be miserable! And the treatment you received is just horrible! What is wrong with people! cripes! I just wanted to send some warm fuzzies your way, and like I said, hope you feel better soon, you are so due for good stuff!!

hugs,
Tracey :)

[Lyn40]

Your case is the perfect example why we need more IC recognition, especially among our medical professionals. I'm so sorry you were put through all that. I'm sending my best wishes and hugs. :angel: